• Anonymous
      October 8, 2013 at 7:05 am

      Just ended my first four weeks of Rituxan. Have asked Oncologist and Neurologist for approximate, reasonable time for a noticeable response, assuming I will have one. Answers have beed dramatically different. I realize everybody responds very differently to different therapies. But can anyone share their experience with Rituxan in terms of noticing a response, or concluding there was going to be none?

    • October 8, 2013 at 10:48 pm

      The results of the most recent clinical trial using Rituxan to treat some forms of GBS can be read here: http://www.neurology.org/content/80/24/2217.abstract

      These results may or may not apply in your case, depending on the form of GBS/CIDP and variants you may have. One of our forum members reported success using Rituxan just last month. You can perform a forum search and find all posts related to Rituxan.

    • Anonymous
      October 9, 2013 at 6:01 am

      Jim: thanks for your response and for the info.

    • October 26, 2013 at 5:34 pm

      Hi Rick,

      I saw your post and was wondering if I could pick your brain a little? Because I can’t tolerate IVIG anymore, my doctors have said I need to go on Rituxan too. I have not started yet and am a little scared about the side effects, etc. Can you tell me what your experience was like? Are you sick after getting it? Hasve you noticed any improvement at all? Any worries about long term side effects? ANYTHING you can share with me would be appreciated.

      Thanks, Karen
      PS- I have been diagnosed with CIDP or MMN (they can’t seem to decide which) over 15 years ago.

    • Anonymous
      October 27, 2013 at 7:14 am

      I had 4 weekly doses, 600mg each, of Rituximab. No side effects at all, except for the ones caused by the Decadron (20mg) that is usually infused with the Rituxan. As with all steroids, I felt tired, with frequent heartburn, and hungrier than usual. Not bad at all. Aside from my known side effects to steroids, Rituxan was a walk in the park. I am back on IVIg since Rituxan is not expected to have any effect until the 6th week after infusion and up to 4 months after treatment ( according to Neuro ). For what I have read side effects can be serious but are very rare. Good luck!

    • October 27, 2013 at 6:00 pm

      Thanks Rick,

      IT is interesting to hear the differances in treatment plans. I am going to be getting mine at OHSU, here in Oregon. The Oncologist claims ahat I will probably only have to have two infusions, 15 days apart, and then they will check my “b” cells. IOf they are surpressed enough, then that is all. He also said that then they would just do blood tests and keep an eye on those cells, and it could be a year or more before I would need Rituxan again. He has one patient that hasn’t had another infusion for 18 months! I sure hope he is right….! I can’t hafve IVIG at all, so have not had any treatment since June now.
      My Oncologist didn’t say anythign at all about Decadron either. Hoping they don’t have to use that as I have had some bad reactions to it in the past.
      Thanks again for sharing your journey with me. Maybe we can compare notes on here as we both go forward?

    • Anonymous
      October 28, 2013 at 6:39 am

      My Oncologist and Neuro both agree that the Rituxan has the potential to either improve symptoms significantly or even induce a remission. They also agree that next dose will be determined by: 1) response (since there is a possibility of no response at all) and 2) duration of effects. They both have patients that have gone in remission with a single dose, as well as other “responders’ that receive infusions anywhere from 6 months to 2 years. They also agree that Rituxan is quite safe and is effective inmunosupression for CIDP in certain patients. Specially those of us who do not respond or have too many side effects with the more common treatments.
      I was tested for clonal white cells and B cells. No anomalies where found, but they still thought Rituxan was a good choice since response doesn’t seem to be related to any particular type of CIDP ( their opinion ). I did receive, on every infusion 50 mg Benadryl, Zantac and 20mg Decadron prior to the Rituxan. Also weekly CBCs day before Rituxan. I met few other patients receiving Rituxan, and all seemed to have essentially no side effects. Of course it works differently for different individuals.
      Feel free to compare notes.

      • January 6, 2015 at 4:57 pm

      • February 19, 2015 at 11:16 am

        I have been on IVIG since 2009 for CIDP. I was diagnosed with small cell lymphoma in 85% of the bone marrow. The oncologist prescribed Rituxan once aweek for 4 weeks. They now have it set up for me to receive 4 treatments every 6 months. I had a problem a few months ago with the billing for the IVIG treatments. My doctor said I had improved since being on Rituxan and wanted to stop the IVIG treatments for the time being and if I started going downhill then he would start IVIG back again. My last treatment was at the end of December and I have not noticed any difference. I have not had any side effects from the Rituxan except occasionally Benedryl legs.

    • December 12, 2014 at 12:10 am

      I’m on my 2nd round of 720 MG Rituxan this week, it’s about a 4 hour Chemo Therapy treatment for me with a standard IV (my days of the tunneled catheter for PE are way behind me, ditto the PICC line for IVIg).

      It was determined that my Anemia was due to abnormal clonal B cells in the marrow. The Rituxan is supposed to “take them out” by marking them as bad guys so my T cells can kill them off. My Hematologist/Oncologist said it could take 4-6 weeks for this to work on my Lymphoma.

      Side affects for me include extreme itching all over (broke 3 finger nails scratching), muscle pain in legs and hips, squirmy-twitchy-restless legs (kept me awake at night), couldn’t sleep more than 2-3 hours at night (night following infusion), feeling of being very bloated, constipated, and just plain yucky. Some of this is said to be due to the Benadryl (legs). The itchiness was stopped by increasing the Benadryl to 25 MG, but the Benadryl has its own side affects for me.

      I have about 6 more treatments to go and am not looking forward to it. If it helps to keep my CIDP in remission it will be worth it, but I just want my Anemia to be over with right now.

      Anyone else on Rituxan for Anemia or Lymphoma?

    • February 6, 2015 at 8:39 pm

      I have tolerated the Rituxan well and had only minor itching during initial IV’s. My worst reactions were to the Benadryl (made my legs feel squirmy and crawly) but it wears off in a few hours. I tried without the Benadryl, but the severe itching came back for me. Benadryl at 15MG is the dosage that I stuck with (doctor recommended 25MG, but that was too much for me).

      Rituxan has a “half life” of 3 months (compared to just 20 days for IVIg) and I’m scheduled to get a maintenance dose every 3 months for 2 years.

      I’m on Medicare and the Rituxan treatments qualify to be billed under Part B medical, where my cost share is the lowest with my “Plan N Supplement”. If billed under Part D prescription drugs … good luck, you could go bankrupt paying for it at around $17K per each 3-4 hour treatment!

      Funny thing about the Rituxan is that I’ve recently noticed my right foot is getting a little more movement in it, not enough to walk or stand on it, but a slight lessening of paralysis. Could it be the Rituxan has helped my CIDP in addition to my anemia? I think it may have, or my body is better able to repair the CIDP related Axion and Myelin damage after the Rituxan treatments.

      Rituxan has made me more hopeful after having been paralyzed since 2008. I would recommend other CIDP sufferers at least look into the possibility of using it to treat CIDP, RGBS, MFS, and MMN. It’s a newer alternative to the too often recommended IVIg, SCIg, and Plasma Exchange (but I do swear by the PE which helped me greatly in 2009!).

    • February 6, 2015 at 9:48 pm

      I am now approaching two years since my last IVIG treatment. Still waiting for OHSU to figure out insurance to pay for Rituxan. So far, no luck with my Medicare and supplimental. I am getting worse by the day….any suggestions on getting insurance approval? My doctors say I can not have IVIG ever again. Thanks – Karen

    • February 6, 2015 at 10:56 pm

      Karen, My oncologist/hemotologist was denied reimbursement for Rituxan initially due to it’s cost and being a “prior authorization required” drug. “Medical necessity” had to be explained to them (Blue Cross Medicare) before they would approve its use. The key for me was to have Rituxan billed directly to my primary insurance carrier (Medicare if you have a supplement) under Part B.

      Perhaps, depending on your insurance carrier and your policy, you would have better support from an Oncology specialist who treated you with Rituxan in their outpatient facility/clinic. They would have experience in dealing with insurance company requirements for Rituxan and can argue for approval of the treatment better than a nuerologist.

      Perhaps you should checkout: http://www.ohsu.edu/xd/health/services/providers/index.cfm?personID=2855 I do not have any experience with this doctor, but he seems to have expertise in an area where Rituxan is often used as a primary treatment. Maybe he can write a justification for your insurance? Maybe if Rick3224 is still reading this post he can suggest a doctor who got him through this.

      I wish you the best of luck in getting treatment.

    • February 7, 2015 at 1:01 am

      Thanks, Jim-LA. I should have said that I was referred to an Oncologist at OHSU and he is the one I am trying to get a definitive anser from about insurance coverage. All my docs agree that I should start on Rituxan, but I won’t until they can give me a guarantee I won’t have to pay. Guess I will have to keep bugging them….was hoping someone on this forum could give a tip as to how to get it approved. I will talk to them about medical necessity, as that is the case with me. I can not have IVIG…I did that for over 15 years, and it finally started causing bad problems with my kidneys. Blood in urine for three weeks after treatment. Not good. Thanks again for your help….I’ll keep at it!

    • February 7, 2015 at 2:45 pm

      Rituxan is a genetically engineered monoclonal antibody that targets a specific protein, known as CD20 found on the surface of normal and malignant B-lymphocytes. Insurance companies have very specific guidelines covering “medical necessity” for this drug. Here is an example of the guidelines from my ex-insurance company in California:
      And from Oregon:

      Guidelines vary by insurance company and State. Your doctor must make a case that addresses the specific guidelines developed by your Ins co. Who are you insured with? Do you have their policy for Rituxan?

      Once you’re request for the drug has been officially denied, you can take it through the grievance-appeal process. I did this twice with BCCA and won. The State is usually on the side of the patient in a grievance case.

      Hope this info helps you Karen. It’s terrible how much control Ins co’s have on our health and well being these days. I wish you a speedy authorization process and hope you get started on Rituxan soon!

    • February 7, 2015 at 3:49 pm

      Thanks again Jim! I will look over the links you posted and keep working towards getting approval.

    • February 5, 2019 at 9:47 pm

      I will be receiving my first Rituximab treatment in two weeks. I will have two treatments every six months. I was told it could take up to a year for some people to
      respond and sometimes it doesn’t work at all. The brain virus side effect is frightening and all the other potential infections one can get due to the immune system weakening. My immune system is already compromised. I’m hoping for the best and will report on how things go.